Grace is 6 today, Happy Birthday!
Love and Hugs from Everyone.
Why don’t you buy Grace a Birthday present? Please consider a donation…..
Donate at the International Rett Syndrome Foundation’s website (select Race for Grace RI as the Program Area)
or
Send check to (pay “Race for Grace”)
Race for Grace
34 Old Pine Road
Narragansett, RI 02882
Dear Race for Grace Supporters,
I feel like I have been underground for quite some time. Race for Grace plans have been at a bare bones minimal this year. Life has taken over. Work, house, kids, family have all taken precedence over anything extracurricular and unfortunately Race for Grace has landed in that category. I am writing today to remind you of the Race for Grace on May 29th and call out with a desperate plea for help to make it a success. I am unable to do this on my own. This entire Race for Grace experience has always been a collective effort ~ combining supports great and small. This year, I ask that Race for Grace be YOURS. It isn’t the Reddingtons that are hosting it this year. It is all the Friends of Grace that have sustained the fundraising, faith-raising and inflated spirits for the past three years. As you know, this is the fourth and final Race for Grace and my lofty goals for promotion, fund-raising, letter writing and soliciting have fallen short this year.
This week, during spring vacation, I have had the bittersweet experience of spending a week alone with Grace for the first time ever. David and my four other children scooted down to Florida for a much needed break. Unfortunately, family vacations that include all of us, are not a possibility with Grace. She is too fragile to travel and we have had to recognize and act on the need to divide and conquer. This was the week that I truly experienced how silent Grace really is…how locked inside her mind she is. She began the week content and became progressively agitated as I once again began the frustrating and desperate process of diagnosing what is bothering her. Doses of strong pain meds is the last resort. She’s tormented by something and perpetually exhausted. After being up for less than 6 hours this morning, Grace had already fallen asleep 7 times by 1 pm. She wakes with a jolt and a pounding heart. She then burns most of her fading energy and falls back to sleep, often through fatigue, tears, and screams.
I woke up from sleep last night, alone in the house, listening to Grace struggling to cope with her tormented state with her breathless panic, knowing she was seeing something or hearing something that terrified her. Who knows what she experiences. As usual, there is no “fix” for her. I can’t tell her it’s going to be ok, because for her, the reality is…it’s not going to be ok. She is gripped by something greater than her body’s ability to fight back. I prayed for her and begged God to bring her peace and comfort. I don’t know how long it took for her to fall back to sleep, of if she ever did, but by morning, she looked like she had been through a war and she has. She continues to battle this war on her own, with the glimmer of hope that someday, maybe someday, that miracle we work and pray for through Race for Grace will be realized.
So, what do I ask of you at this time? We need cash donations galore, participants, auction items, raffle items and lots of motivation. If you are coming to the Race for Grace, please try to find as many people to sponsor you as possible. This is done by basically letting people know you are running/walking/strolling in the Race for Grace and ask people if they would be willing to sponsor your participation with a donation. We also need participants who can likewise find their own sponsors. Going back to the ‘10 for 10’ from last year ~ if each of you asked 10 people to participate and those ten people each found 10 sponsors…that’s a lot of research money that could lead to ‘saving Grace’ and many other girls suffering from Rett Syndrome.
If you cannot attend, please consider finding sponsors anyway and send in those donations via mail or online. If you are not in Rhode Island or even in the US, please find a way to rally support for Race for Grace by sending out letters and emails to as many friends and family as possible. More than any other way you can help, we need to continue to storm heaven with prayers for Grace so that she finds peace and is released from her torment. Grace needs you more than ever. Please let her inspire you to work harder than ever this year to make it a great event where we can gather together under one unifying element: GRACE.
It has not been easy to ask anything of any of you over the past years as I’ve prepared and fought hard to make Race for Grace a success. I can only humbly thank you for making it what it has become and recognizing the value and importance of coming together to hope, love and support such a worthy cause. Race for Grace is five weeks from today. We could see that as either a little time to prepare or plenty of time to gather momentum, support and donations from all over the place.
Please forward this to as many people as possible as it is the final plea from Grace and the Reddingtons to make Race for Grace a beautiful and successful event one last time.
God bless and peace in your families,
Dear Friends of Grace,
I know my letters have gotten farther and fewer between, but that’s not for lack of things happening around here. Grace is just emerging from another rough patch. It seems that she always leaves something behind every time she goes through a difficult phase. She spent over a week with her silent tears and perpetual sadness and when she finally “came back”, it seemed she was a little further away from us. It’s hard to explain, but there are more periods of vacancy in her eyes these days and it’s hard to know if it’s permanent.
I just returned one week ago from my own vacancy. I traveled to Ireland and from there, traveled to Bosnia/Croatia to Medjugorje, a small village where miracles are reported to occur-miracles of physical and spiritual healings. My sole purpose for going was to pray as hard as I could for Grace. One week before I left on my journey, I was home folding laundry.
It was another frustrating Saturday for me where I was once again home for the weekend, catching up on laundry, kids, cleaning and Grace after working all week. Grace was not having a good day, which unfortunately has been the norm lately. My mother came over to support me in my quiet misery and gently commented that I don’t seem to spend enough time praying anymore. I snapped back at her, “Then HE better make time for me to pray because I have NONE!” (Accusingly pointing my finger toward heaven). A few hours later, I got a phone call from a friend inviting me to join her on a pilgrimage to Medjugorje and that she would be leaving in 6 days. For those of you who have never heard of Medjugorje, it is most similar to Fatima, Portugal where the Virgin Mary appeared to three children.
I originally had plans to spend vacation week with my children in New Hampshire, but after hearing I had an opportunity to go on a trip and pray for Grace, they gave me their blessing. David was supportive from the moment I told him I was thinking about going. He said he would make it work even though he was scheduled to work that week because it was a coveted school vacation week and he is never able to get that week off. I felt that God had personally invited me on this pilgrimage and I couldn’t refuse the invitation. The next day, my mother came over to babysit so I could go to church and she handed me a prayer card that she had meant to give me the day before. It was a picture of the Virgin Mary and it said, “Medjugorje”. I booked my ticket. I was set to leave in five days.
David went off to work that Sunday night and called me a couple of hours later telling me that miraculously, the week had opened up and he would be able to take a vacation. Another blessing and another confirmation that it was meant to be.
During the next few days, I had to get to Boston and apply for an emergency passport. Getting through the traffic and the lines at the passport office was another miracle. I said goodbye to my children Thursday night and left for work early Friday morning with my suitcase in the car. I went to Logan Airport in Boston straight after work and by 3 o’clock, I was on my way.
Arriving in Medjugorje with a hope-filled heart and a suitcase full of prayer requests from friends and family, I was overwhelmed. I had never left my children or even David before. I was a strange feeling but I had no doubts that I was where I needed to be. During the week, we visited the local church, an orphanage, a recovery community for boys with addiction, and climbed “Cross Mountain” and Apparition Hill where the Virgin Mary has appeared to 6 local visionaries. During the week we were completely emersed in the peaceful pulse of this war-torn community of devoted and prayerful people.
There was such an incredible sense of holiness and peace in the places I visited as I realized how many other millions of pilgrims stood where I stood for all their million different reasons and brought their despairs, hopes and faith to these same blessed grounds. Wherever I went, I brought Grace with me. Whenever I prayed, I prayed for her. At one point, as I stood on the Apparition Hill, and begged for help and healing for Grace, I realized with such certainty that it wasn’t Grace that needed the healing after all. It was me. I was there for my own healing of a different kind.
Well, I received it. It was as if the tank of fumes I was running on suddenly got filled up. I felt a pouring of grace into my soul and deep inside, there settled a deep sense of peace, renewal and clarity.
As much as Grace’s body is often in a tormented state, her soul is not tormented. But so many of us do have tormented souls. We are tormented by our worries of tomorrow, our regrets of yesterday, our “what if’s” and “should have’s.” All too often, we focus on what we don’t have or we get stressed over the situations we find ourselves in, instead of accepting our circumstances with faith and confidence. If there’s one thing Grace does, as you all know by now, it’s live in the moment.
I realized that I must never stop being thankful for Grace and the gifts that she has given me and given so many people. It is because of Grace and her suffering that I have come to connect so strongly with God and with so many of you, her faithful friends. Some day in heaven, Grace’s broken body will be restored and more perfectly matched to her beautiful soul. My faith assures me of that. I know her healing will come in God’s time. For now, despite her tears, my spirit feels very strong.
In church this morning, Monsignor Halloran talked about coming in on the Block Island Ferry years ago before digital technology. He recalled that in times of heavy fog, the captain would shut down the motors so he could hear the fog horn and get his bearings. I was so blessed to be able to go to Medjugorje and shut down my motors. I heard God’s call to me loud and clear and I have now turned back on my motors and maintained my bearings. Now that I am back from my incredible journey, I have to stay on course and continue to follow the messages from my pilgrimage…work, prayer, service, love and gratitude for everything we have at all times…even our sufferings which strengthen us.
I will end with reminding you that Race for Grace Fourth and Final is set for May 29th same time and place as usual ~ 10 am, St. Veronica Chapel, Narragansett. I haven’t done a THING for it yet, but my faith reminds me, it will all get done. Hoping for the biggest and best turnout EVER!! I ask for now only for your prayers that the event will be a huge success and Grace will have another opportunity to reel in more souls into her circle of love.
Peace,
Tara
Grace and Tara featured in the International Rett Syndrome Foundation Annual Appeal
Dear Grace Fans,
I have been out of touch for so long, I don’t know where to begin. We are coming off the heels of a very special Christmas for the Reddingtons. I pray that you all have a blessed New Year and I hope that my letter finds all of you in a state of peace and faith that despite the heartaches, trials and stresses of life, there is a great plan for us all. No doubt, there are times in life where it is hard to imagine a “great plan” evolving while we are drowning in sadness and chaos but I have come to believe it and feel it and trust it. I hope that you too can grow in this way and perhaps Grace and her life could be a small part of your journey.
I am still working full time. David is also working full time at night. This has been the busiest time I’ve ever experienced in my life yet I have a peace deep down that sustains me through the daily hustle. The peace comes from the trust in the greater plan and I have confidence that my family is journeying along the road that will lead us to that place in time where we will have peace not just in our hearts but also in our lives.
Our home has been permanently and beautifully Grace-proofed thanks to a tremendous secret fund- raiser organized without my knowledge and despite my forbidding threats to not have one. The fund raiser was called “A Safer Place for Grace” and some incredibly dedicated friends and HUGE fans of Grace were able to make our dream for a safer home a reality. We have struggled with a little girl who has incredible mobility and hand use but no cognitive control over her body. Living with Grace has been a very stressful and constant source of risk and danger for her and our family.
We are now living in a home that allows Grace to be independent and safe and I no longer have to wish away her mobility because I can’t manage it! A grant from the state I had been working on fell through in the spring and our hopes died along with it. David and I looked up and said, “Ok, God, if we have to stay in this house like this….” and that is when He took over and things started happening without our knowledge.
The happy ending is that we cleared and moved out of our house on November 30th and Woodmeister Master Builders (who donated $30,000 of the project cost) came in and completely changed our home from chaos and cramped to clutter-free, safe and graceful. It was absolutely the BEST Christmas gift for my whole family and especially Grace who can now live freely and safely in her home. THANK YOU to everyone involved!!! God always takes care of the Reddingtons.
Race for Grace Strollathon 2010 will be the fourth and finale! There is not much pie left in the slices of my life anymore. I cannot devote time that I don’t have so I will need your help to create the best, biggest and most successful Race for Grace EVER!! We have raised $362,000 in 3 years. I have no doubt that together, we can sail past $500,000. As long as Grace has Rett Syndrome, I will Race for Grace in my everyday life and the many little mini-events that happen all year long. The Race for Grace is not ending, but the big Strollathon event will be the last one. My children are very disappointed but there isn’t any possible way for me to keep it going without taking away important time from my family. It is set for Saturday May 29th, 2010. I hope that you will come, bring as many friends as you possibly can and help me and Grace get the word out one last time.
Grace continues to have her good days and bad days. She is in school full time and continuing to touch hearts and change lives whenever she encounters people. I wanted to be able to share some lessons I’ve learned from Grace in time for the New Year that is upon us. For 2010, I hope that you can incorporate some of Grace’s best advice into your own lives. She lives simply and experiences feelings in their purest form. When she’s happy, she’s happy. When she’s sad, she’s sad. Grace doesn’t incorporate bitterness, resentment, guilt, regret, or other complicated emotions into her experiences. She lives in part, the way we should all live…for the moment. As her mother and her voice, I once again have tried my hardest to get her message out to you. I hope you are inspired by her ways…
Grace’s Simple and Profound Lessons:
- Look directly into the eyes of everyone who comes before you
- Find something to love in everyone (yes, everyone!!)
- Cry when you are sad or in pain
- Laugh when you feel silly and enjoy a good giggle
- Scream when you are mad
- Don’t hold onto old hurts (either from years ago or moments ago)
- Don’t worry about the “what ifs”
- Be willing to approach new people
- Don’t be afraid of people who are different
- Everybody needs to be loved
- Eat slowly Savor good tastes (smack your lips if it’s really good)
- Smile when you snuggle in your cozy bed
- Be thankful for simple moments TV does nothing for you
- Fall asleep in someone’s arms
- Do a chocolate dance when you eat it
- Smile when you wake up
- Laugh out loud
- Hide and seek is fun (no matter how old you are)
- Touch the faces of those you love
- See the angels around you
- Remember that no matter how much it hurts inside or out, God is with you always.
Merry Christmas and Happy New Year!!
Love,
Tara
Dear Friends of Grace,
I’ve gotten so many inquiries lately about how things are going here with Grace and the kids back in school and me working full time. Things are quite different. David and I pass for a few hours each evening and he’s off to work. He has a job for another 16 months so we are going to make this work as best we can for now. We also had to say goodbye to a very important part of our family. Many of you had the honor of meeting Jack, a twenty year old “Friend of Grace” who became her care giver and official “Best Friend of Grace” without a doubt. He wasn’t an outsider in our home. He was an insider and a dear member of our family and was with us almost every day for five months. He left for Army bootcamp the end of August and we have missed him terribly. He and Grace have given us all the inspiration to never give up, work hard and fight hard every day. Failure is not an option for Grace, Jack or the Reddingtons.
I transitioned back to work with a rough start just days after Jack left, but finally feel like the turbulence is settling down. I felt much like a veteran soldier returning to “normal” civilian life after fighting a war for three years ~ a war of tears, screams, seizures, deterioration and isolation among other things. I knew nothing other than life in my home, with Grace and my family and the constancy of the crisis management that we’ve had to deal with since diagnosis day. A year ago I would have called me working full time impossible. I also remember working with a Down’s Syndrome child 3 years ago. The parents had no other children and I wondered how they could manage a child like him. He was a sweet and beautiful child, but a lot of work. I never thought I could have dealt with Rett Syndrome either, but we’re doing it. When we are given a task, we have to accept it and do it as gracefully and willingly as possible. That’s all any of us can do.
Having to adjust to so many changes, so quickly has been very challenging not devastating, but definitely testing our perseverence and faith.
When you have literally zero time to focus on anything but survival for yourself and your family, it is quite a transition to let go of that way of living and begin to live a life that is completely separate and different from what has become a familiar existence. I am not a quitter. Because of Grace and the life I’ve been blessed to live with her, I am stronger and more determined to “complete the mission.” You learn to complain little and appreciate lots when you live with someone like Grace.
I’d say, Lily and I struggle the most. I struggle with trying to keep up with the demands of Grace’s needs at home and working out some sticky issues at school (trying to fit it all in) and Lily who’s a dainty three year old is trying to cope with missing her mommy. She’s always had to make do with the mommy time she had, but now especially, there’s very little time left in the day. Last night, I was trying to get her settled into bed, with all her belly aches and questions, while Grace was screaming on my hip, I was hurrying out of the room and Lily says with a very brave little voice, “But Mommy, where do I put my tears?” That’s the hardest part about life right now…knowing that my children need something from me that I can’t give them. It’s a tough one to cope with but I’m doing my best and praying more than ever for more time, more strength and more grace to get it all done.
I’ll end on that note and thank you for all the continued prayers, support and encouragement that really does get me through each day. Please always remember Grace in your prayers and Jack too, her best friend.
Thanks for all the continued support of our family and Grace.
Love from Tara and all the Reddingtons
For you mountain biker enthusiasts and those of you who have adventurous kids…There’s an event coming up Saturday October 3 at Diamond Hill Park in Cumberland. “Take your kid mountain biking day” If you know any families that would be interested, please pass along the information.
Donation to participate is $5 and all proceeds will benefit…you guessed it: The Race for Grace!! Click on the flyer below for more details.
Hope you can pass along the information on this event to friends and family that might be interested.
On September 26th please bring your coins to BankNewport’s Narragansett branch on Point Judith Rd to raise money for the Race for Grace.
“The people running their coins through will receive 100% of their money, the donation will come from BankNewport.”
Many thanks to Jennifer & BankNewport for supporting the Race for Grace.
I know in my house, counting coins is a task that often get neglected until it is a monumental effort to dump out the coins and start counting and rolling. Bank of Newport in Narragansett is hosting a free coin counting day and the bank will make a donation based on how much money is counted in their coin counter on that day. PLEASE take a trip to Bank Newport on Point Judith Road in Narragansett on Sept. 26th and bring all your unrolled change. It’s quick, easy and YOU keep all your money (most coin counters charge 7%) and the bank will donate to the Race for Grace. It’s a great way to raise some Fall Funds for the Race for Grace at no cost to you. AND you gain access to what our family calls “Fun money”…extra money to do something fun.
Tara
Hello Tara!
My name is Jennifer Jurczak and I am the branch manager of BankNewport’s new Narragansett location on Point Judith Rd. I was wondering if you would be interested in partnering with us to do a fundraiser which would benefit The Race for Grace later this month. I know that the race is not until May but I am hoping you would still be interested!
Our branch has a coin counting machine that is always free for our customers to use. We are going to have a Coin Counting Day on September 26th where the machine is free for everyone! What we do is partner with a local non-profit and then the bank will make a donation to the non-profit based upon how much coin is run through the machine that day. The people running their coins through will receive 100% of their money, the donation will come from BankNewport. We have had good turnouts in the past with this event and would love to work with The Race for Grace!
Thank-you!
Jen
Jennifer Jurczak
Branch Manager / Officer
Narragansett Office
tel: 401-782-1089
fax: 401-782-8523
jennifer.jurczak@banknewport.com
Dear Friends of Grace,
So Grace is 5 years old as of yesterday (July 28), thanks to God. The first two years of her life were very happy and “normal.” The past three years have been quite different as you all know. She’s been faced with a vicious assault on her body and mind. She’s fought long and hard to survive her daily and often momentary battles. Through it all, her spirit has remained strong, so strong.
Over the last three years there have been many times when things got so bad for Grace, I have prepared myself (and my family) to “let her go” - not for my sake but for hers. After celebrating her fifth birthday and seeing how radiant and beautiful she continues to be, I cannot help but find comfort in allowing myself to believe more and more that she is not going anywhere. She’s a survivor. She’s a little comeback kid. She has dipped so low in her health and strength so many times, but yet she rises out of the ashes on every occasion. She’s amazing.
I always wonder what the next possible lesson from Grace could be for us all because I have learned so much from her already in these 5 short but LONG years. The notion that “quitting is not an option” has never been so crystallized in my mind. When I’m carrying her and my arms are burning, I cannot put her down. When she’s vomiting her meds and looks exhausted, we have to clean her up and try again. When I don’t want to get out of bed but I can hear her yelling out “mommy” in the early morning, I just get up. There’s nothing I wouldn’t do for her and in her name. I realized lately that I can scrub my bathtub for her. I can wash dishes for her, cut the lawn for her, suffer through my own meager discomforts for her, pray even when I’m too tired for her.
She pushes me, challenges me, shapes me and makes me want to try harder, work harder, push harder to get it all done and I will…for her. I am going back to working full time in one month. There are some changes in our home that will be challenging and some heartbreaking. My head and heart is full of wonder and concerns about my family life, my children’s needs and Grace. David will be working nights. I will be working days. Only through the grace of God will we figure it all out and still maintain love, peace and order in our home. Through all the hypotheticals that could drive me crazy, there’s only one central theme that keeps me going…we will do it all for Grace and it will be all right. If it wasn’t for Grace and all the comforts and strengths that she brings to my heart and mind, I couldn’t do it.
I am so thankful for her life and the ability through our faith to transform our family’s biggest heartache into our greatest source of strength. Race for Grace is an incredible experience and it is truly a way of daily living. Learning to accept and accomplish all your menial annoying little tasks and even the great big ones…for her. It’s one of the greatest lessons I’ve learned from Grace. I don’t just do for her. She does so much for me…for us!!
Thank you for continuing to ride this wave of Grace with us.
Continue your prayers…for her.
Love,
Tara
Grace is 5 today, Happy Birthday!
Love and Hugs from Everyone.
Why don’t you buy Grace a Birthday present? ….
Please consider donating $5 in honor of her 5th birthday to the Race for Grace cause on Facebook
or
Donate at the International Rett Syndrome Foundation’s website (select Race for Grace RI as the Program Area)
or
Sponsor a drug in honor of Grace with the Rett Syndrome Research Trust (select Grace Reddington from the list)
or
Send check to (pay “Race for Grace”)
Race for Grace
34 Old Pine Road
Narragansett, RI 02882